Thursday, April 2, 2009

Wednesday is therapy day…

I know I’m not the only person in the world who uses a calendar to write down appointments and dates that need to be remembered and then forgets to look at what she wrote down, right? Wednesday is our therapy day, it has been for the last month or so, but I can’t seem to remember that! Our kids have a different school schedule this week, which doesn’t help my forgetfulness. It’s just that Wednesdays used to be my catch up on everything I need to do day, you know my I feel like I need to do this or that day. I woke up remembering that Lucy had speech and feeding therapy in the morning, I just thought it was at 9:30 not 9:00AM. All I can say for this is thank goodness I was showered and almost dressed when I heard the door bell.

Yesterday we worked more on speech therapy instead of feeding therapy as we are really trying hard to cut back on the solids per our GI’s request. Lucy is a quiet baby, which is my way of saying she is profoundly speech delayed. Yes, her therapist used the word profound when describing Lucy’s speech delay. Ok, so we’re aware that she is not a very verbal baby, but like almost all things with Lucy we are having a hard time grasping the extent of her issues. We are going to start weekly speech therapy and biweekly feeding therapy in an effort to keep on top of Lucy’s progress. One of our goals with Lucy is to use simple signs for everyday tasks and objects so that she can communicate with her hands until she is able to vocalize the words. In theory this is an excellent idea; however, we are noticing that Lucy very rarely brings her hands together. She seems to favor her right side, not really using her left side much. Her left side is much weaker than her right. A great example of this is when she is eating Cheerios in her high chair, she eats from the right side of her tray using her right hand and cries for more Cheerios when she still has Cheerios remaining on the left side of her tray. At first we just thought that she was one of those eaters who eats from one side first and moves her way across, you know like those eaters who eat all of one food first before they move to the next food on their plate. Babies Lucy’s age do not show a preference for handedness, so that’s not what’s going on here. In an effort to strengthen her left side, we are frustrating the heck out of her by forcing her to use that side! It is very obvious to us, now that we are doing this, just how much she does not like using her left arm to do much of anything. In general, she uses her left arm to stabilize her body when sitting. We are going to look into adding additional occupational therapy to see if we can help her to over come this weakness. As if this wasn’t enough, we also need to look into having Lucy’s hearing tested. Because she has such a “profound” speech delay there is a concern that she could be experiencing some hearing loss, if I had to guess it would be more in her left ear than her right. I am going to make a call to the ENT at CHOP to see if we can get her in soon (optimistic or naive, call me what you want;)!

A lot of Lucy’s issues seem to stem from her body’s muscle weakness aka hypotonia. As she is growing older, we are realizing how much more of an issue this is for her. We are anxious to have her see her neurologist, that appointment is scheduled for the 27th, but if I can get her in sooner I will! Lucy’s neurologist is a neuromuscular specialist and we are interested in her medical opinion as she has not seen her in six months.

We received a call from Dr. Schoffner’s office manager yesterday informing us that he is currently reviewing Lucy’s records. As soon as he is finished doing that, they will call us to set up an appointment if he wants to see her. They were so nice when they called, sympathizing with us for all that we have been through. They wanted to give us an update on the process ,and to let us know to hang in there just a little longer. Hopefully, we will know something by Monday!

1 comment:

Hi there Marlett's!! I read your blog all the time but never have time to comment. I would love to talk to you sometime-we seem to have so much in common. Our Rinnah has hypotonia,feeding issues, trouble gaining weight, 'profound' delays in speech as well as delays in almost all other areas. We always have our weeks full of dr and therapy appts. I always have little Lucy in my prayers. And I didn't know until recently that I share my b-day with your little princess too.I'll try to find time to call or write soon! Have a great weekend!Kristina

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In loving memory of Lucy Grace Marlett, the bravest five-year-old girl we know. Please help us to find a cure for Mitochondrial Disease by clicking on the image and donating to the "For the Love of Lucy Research Fund" established by her family and the UMDF. Thank you for your love and support!

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We are All the Marletts, a family of six trying to live life to its fullest! My husband and I fell in love at a young age and dreamed of being married, having a family, and growing old together… Even though our life is what we hoped it would be, we could never have imagined what GOD had in store for us along the way. Being parents to four remarkable kiddos has proven to be MORE in every way! When our youngest was born, although we didn’t know it right away, we were given the privilege and challenge of raising a “special child”, a medically complex child. Since starting this blog, Lucy has been diagnosed with Mitochondrial Disease, a progressive degenerative disease of energy metabolism. Even though this is a blog about our life as a family, I write often about Lucy’s medical issues. If you care to read about the trials and tribulations of raising four children, the joys and hardships of our family life, the emotional roller coaster ride that raising a medically complex child puts one on, and the love that pours from my heart onto the pages of this blog then…welcome!